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The purpose of this study was to describe coping in mothers of adolescents with type 1 diabetes and to examine the association among mothers' diabetes-related stress and coping strategies and maternal psychological distress (e.g., symptoms of anxiety and depression), adolescent adjustment (e.g., symptoms of depression, quality of life), diabetes-related family conflict, and glycemic control. One hundred and eighteen mother-adolescent dyads completed measures of diabetes-related stress, coping, symptoms of anxiety and depression, quality of life, and family conflict. Data on glycemic control were collected from adolescents' medical charts. Single/divorced mothers and mothers of color were significantly more likely to use disengagement coping strategies (e.g., avoidance) than White and married/partnered mothers. Mothers' use of primary control coping (e.g., problem solving) and secondary control coping (e.g., acceptance) strategies was related to fewer symptoms of anxiety (r = - .51, -.39) and depression (r = - .32, -.37) and less family conflict (r = - .22, -.30, all p < .05). Mothers' use of disengagement coping strategies was related to greater symptoms of anxiety (r = .30) and depression (r = .27, both p < .01). Further, secondary control coping was found to mediate the relationship between diabetes-related stress and maternal symptoms of anxiety and depression. Maternal coping was not significantly associated with adolescent outcomes. The ways in which mothers of adolescents with type 1 diabetes cope with diabetes-related stress are associated with psychological distress and family conflict. By identifying and improving mothers' coping through screening and targeted interventions, we may have the potential to improve both maternal and adolescent outcomes.
OBJECTIVE - This systematic review aimed to evaluate the level of evidence of contemporary peer-reviewed literature published from 2004 to 2011 on the psychosocial impact of lymphedema.
METHODS - Eleven electronic databases were searched and 1311 articles retrieved; 23 met inclusion criteria. Twelve articles utilized qualitative methodology and 11 used quantitative methodology. An established quality assessment tool was used to assess the quality of the included studies.
RESULTS - The overall quality of the 23 included studies was adequate. A critical limitation of current literature is the lack of conceptual or operational definitions for the concept of psychosocial impact. Quantitative studies showed statistically significant poorer social well-being in persons with lymphedema, including perceptions related to body image, appearance, sexuality, and social barriers. No statistically significant differences were found between persons with and without lymphedema in the domains of emotional well-being (happy or sad) and psychological distress (depression and anxiety). All 12 of the qualitative studies consistently described negative psychological impact (negative self-identity, emotional disturbance, and psychological distress) and negative social impact (marginalization, financial burden, perceived diminished sexuality, social isolation, perceived social abandonment, public insensitivity, and non-supportive work environment). Factors associated with psychosocial impact were also identified.
CONCLUSIONS - Lymphedema has a negative psychosocial impact on affected individuals. The current review sheds light on the conceptualization and operationalization of the definitions of psychosocial impact with respect to lymphedema. Development of a lymphedema-specific instrument is needed to better characterize the impact of lymphedema and to examine the factors contributing to these outcomes in cancer and non-cancer-related populations.
Copyright © 2012 John Wiley & Sons, Ltd.
BACKGROUND - Lymphedema may disrupt local function and affect quality of life (QOL) in patients with head and neck cancer. The purpose of this study was to examine the associations among severity of internal and external lymphedema, symptoms, functional status, and QOL in patients with head and neck cancer.
METHODS - The sample included 103 patients who were ≥ 3 months after head and neck cancer treatment. Variables assessed included severity of internal and external lymphedema, physical/psychological symptoms, functional status, and QOL.
RESULTS - Severity of internal and external lymphedema was associated with physical symptoms and psychological symptoms. Patients with more severe external lymphedema were more likely to have a decrease in neck left/right rotation. The combined effects of external and internal lymphedema severity were associated with hearing impairment and decreased QOL.
CONCLUSIONS - Lymphedema severity correlates with symptom burden, functional status, and QOL in patients after head and neck cancer treatment.
Copyright © 2012 Wiley Periodicals, Inc.
Quality of life (QOL) has become an increasingly important outcome measure for patient's undergoing treatment for a wide array of illnesses. QOL is a global construct that reflects a patient's general sense of well being. It is by definition multi-dimensional and reflective of the patient's point of view. Health related issues are among the many factors that may influence QOL. Since head and neck cancer (HNC) affects structures that are critical for normal functions such as speech and swallowing, and treatment may lead to deformities that adversely impact psychosocial functioning, there is particular interest in assessing QOL in this cohort of patients. In order to interpret the HN QOL literature, it is important to have an understanding of the significance and limitations of QOL assessments in the head and neck patient population as well as an appreciation for the currently available measurement tools. Unfortunately, the HNC QOL literature has many limitations including: small sample size, lack of prospective data and poor study design. None-the-less, important insights can be obtained by review of the current literature. First, it is important that QOL studies be reported in such a way as to provide clinically meaningful data to clinicians. Linking measurements with clinical benchmarks is one way to accomplish this goal. In addition, both general and HNC specific measures are needed in order to provide a comprehensive assessment of global health and tumor specific issues. In general, QOL declines immediately after therapy and returns toward baseline by 1 year. Several factors have been identified that may predict for worse QOL outcomes including: the presence of a feeding tube, co-morbid disease, tracheotomy, site and stage. Data correlating QOL with functional outcome and symptom burden fails to demonstrate a consistent relationship. This may be attributed to methodological issues in study design or the patient's ability to adapt to functional and symptom control problems. Whether routine use of QOL measures in the clinical setting is beneficial to patients has yet to be determined. Further studies are warranted as currently available instruments may not be valid for repeated clinical use.
BACKGROUND - Improved survival after childhood cancer has shifted the focus to health-related quality of life (HRQL)-an understudied problem, especially among adolescents.
PROCEDURE - We assessed HRQL among adolescents utilizing a validated self-report tool, the Minneapolis-Manchester Quality of Life (MMQL) Adolescent Form, consisting of 46 items comprising seven domains: physical, cognitive, psychological and social functioning, body image, intimate relations, and outlook on life, and computed an overall QoL score. The MMQL Adolescent Form was administered to 226 adolescent survivors of childhood cancer a median of 7.8 years from diagnosis (off therapy-median age: 16.2 years), 136 adolescent cancer patients undergoing therapy (on therapy-median age: 16.4 years), and 134 healthy adolescents (controls-median age: 15.5 years). Primary diagnoses included leukemia (46%), lymphoma (26%), brain tumors (5%), and other solid tumors (23%).
RESULTS - Compared to healthy controls, on-therapy patients were at increased risk for reporting poor overall QoL [Odds Ratio (OR) = 3.3, P = 0.002)] and poor physical functioning (OR = 11.8, P < 0.001). Off-therapy survivors did not differ significantly from healthy controls for overall QoL (OR = 1.6, P = 0.5) or any HRQL domains. Female patients, both on- and off-therapy, were more likely to report poorer overall QoL, physical, psychological and cognitive functioning as well as poorer body image when compared with male patients.
CONCLUSIONS - While adolescent cancer patients undergoing active therapy report poor physical functioning, there is no evidence of long-term QoL sequelae.
(c) 2006 Wiley-Liss, Inc.
OBJECTIVES - We undertook to explore the relationship between non-neoplastic voice disorders and patients' quality of life.
METHODS - A PubMed search (1966 to 2003) for the terms Voice Handicap Index (VHI), Short Form-36 (SF-36), voice disorders, voice quality, treatment outcome, voice outcome, quality of life, and questionnaires was performed. Raw data were obtained whenever possible. Studies were analyzed by meta-analysis techniques.
RESULTS - Of 54 VHI studies identified, 11 were excluded, and of 21 SF-36 studies, 7 were excluded for incomplete data, non-English language, measuring malignant disease, or duplicate publication. Patients with neurologic and inflammatory or traumatic laryngeal disease had worse VHI scores than controls, and those with neurologic laryngeal disease had the most severe impairment (p < .001, Kruskal-Wallis analysis of variance; p < .05, Dunn's method of multiple comparisons). Those with neurologic laryngeal disease had worse SF-36 subdomain scores than did controls in 6 of 8 subdomains (p < .03, Kruskal-Wallis analysis of variance; p < .05, Dunn's method of multiple comparisons). Both patients with neurologic disease and patients with inflammatory or traumatic laryngeal disorders had changes in SF-36 subdomains similar to those of patients with other chronic disease states.
CONCLUSIONS - Non-neoplastic voice disorders adversely impact patients' voice-related and general quality of life, and neurologic voice disorders have the greatest impact.
Health-related quality of life (HRQL) is an outcome that may be used to measure the impact of sickle cell disease on the child and their family but has not been routinely assessed in this disease. The objective of this study was to describe the HRQL of children with sickle cell disease as reported by the parent and the child, to compare the relationship between the two, and to determine the association of parent, child and disease characteristics on HRQL. Ninety-five parents completed the Child Health Questionnaire (CHQ)-Parent Form28 and 53 children completed the CHQ-Child Form87. Compared with the child report, parents reported worse HRQL in the overall perception of health, physical functioning, behaviour and self esteem domains of HRQL (P < 0.005). Parent and child reports of HRQL correlated strongly in assessment of the impact of bodily pain (r = 0.58) on HRQL and moderately in physical functioning (r = 0.44), behaviour (r = 0.45), general health (r = 0.44), self esteem (r = 0.40) and changes in health (r = 0.33) domains. Disease status, neurobehavioral co-morbidities, and parent education were associated with the HRQL of the child. Both the parent and child perspectives are needed to fully understand the impact of sickle cell disease on the HRQL of the child and effect of this disease on the family.
OBJECTIVES - The aim of this study was to compare quality of life and symptoms between breast cancer survivors who have developed and undergone treatment for chronic lymphedema with those who have not developed lymphedema.
PATIENTS AND METHODS - The cross-sectional, mixed-methods design included 64 breast cancer survivors with lymphedema and 64 breast cancer survivors without lymphedema. Variables assessed quantitatively included sociodemographic information, medical data, body mass index (BMI), arm extracellular fluid volume, quality of life (QOL), and physical and emotional symptoms. For the qualitative component, individuals with lymphedema responded in writing to the question: During the past week what other difficulties have you experienced because of your lymphedema?
RESULTS - Compared with those without lymphedema, breast cancer survivors with lymphedema reported poorer QOL. A symptom cluster that included alteration in limb sensation, loss of confidence in body, decreased physical activity, fatigue, and psychological distress was identified. Perception of limb size influenced the cumulative symptom experience more than objective arm volume. Qualitative data revealed multiple QOL, physical health, and psychological concerns. BMI correlated with multiple outcomes.
CONCLUSIONS - Findings suggest that current lymphedema treatments, although beneficial, may not provide complete relief of symptoms associated with lymphedema and complementary interventions are needed. The poorer QOL in breast cancer survivors with lymphedema may relate to the presence of an untreated symptom cluster.
OBJECTIVE - To assess the health-related quality of life (HRQL) of 8- to 12-year-old children undergoing therapy for cancer or childhood-cancer survivors by using the Minneapolis-Manchester Quality of Life-Youth Form (MMQL-YF), a comprehensive, multidimensional self-report instrument with demonstrable reliability and validity.
DESIGN, SETTING, AND PATIENTS - The MMQL-YF consists of 32 items comprising 4 scales: physical functioning, psychologic functioning, physical symptoms, and outlook on life. Scoring on the MMQL ranges from 1 to 5; 5 indicates maximal HRQL. An overall quality-of-life (QOL) score is also computed. By using a cross-sectional study design, the MMQL-YF was administered to 90 off-therapy cancer survivors, 72 children with cancer undergoing active therapy, and 481 healthy children without a history of cancer or other chronic disease.
RESULTS - Compared with healthy controls, children actively undergoing cancer treatment report low overall QOL, physical functioning, and outlook-on-life scores. However, off-therapy survivors report a superior overall QOL, compared with age-matched healthy controls.
CONCLUSIONS - Young survivors of childhood cancer report a favorable HRQL relative to healthy controls. These results are reassuring, suggesting that this group of survivors may have been too young to encounter some of the negative psychosocial impacts of cancer and its treatment.
PURPOSE - To assess the effects of an intervention involving dissemination of treatment recommendations to primary care physicians treating outpatients with acute myocardial infarction or heart failure.
METHODS - The study comprised 509 patients with myocardial infarction and 323 patients with heart failure who were discharged from hospital. The primary care physicians caring for these patients were assigned randomly to either the intervention or control group; the intervention group was mailed practice guidelines immediately after patient discharge, and patients were cited by name. During a 6-month assessment period, the records of primary care physicians (and cardiologists, if any) were reviewed to assess mean conformance with the guidelines, using seven measures of care for myocardial infarction and eight measures of care for heart failure.
RESULTS - After adjusting for demographic and clinical characteristics of patients, and the number of eligible measures per patient, we observed no effect of the intervention on care of patients with myocardial infarction (odds ratio [OR] = 0.98; 95% confidence interval [CI]: 0.81 to 1.17) or heart failure (OR = 1.25; 95% CI: 0.96 to 1.59). However, there was a higher likelihood of conformance with measures for patients with infarction (OR = 1.56; 95% CI: 1.29 to 1.87) or heart failure (OR = 1.71; 95% CI: 1.29 to 2.23) who had also been seen by a cardiologist during the 6-month assessment period.
CONCLUSION - Mailing treatment recommendations did not improve the quality of care of recently discharged patients with myocardial infarction or heart failure. However, efforts to include cardiologists in the care of these patients might be worthwhile.
Copyright 2004 Elsevier Inc.